{"title":"'Yebo, it was a great relief': How mothers experience their children's autism diagnoses.","authors":"Mbalenhle N Manono, Mary G Clasquin-Johnson","doi":"10.4102/ajod.v12i0.1101","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>There is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. Mothers' reactions to their children's autism diagnoses have been identified as a key factor influencing their children's long-term outcomes.</p><p><strong>Objectives: </strong>This qualitative study aimed to explore how South African mothers experience their children's autism diagnoses.</p><p><strong>Method: </strong>Telephonic interviews were conducted with 12 mothers from KwaZulu-Natal to understand their experiences prior, during and following their children's autism diagnoses. The data were analysed thematically according to the values of <i>ubuntu</i>, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an Afrocentric theoretical lens.</p><p><strong>Results: </strong>The participants held strong cultural and religious beliefs which influenced the entire diagnosis process. Some, who waited a long time, turned to traditional healers or religious leaders. While some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child's condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. Over time, mothers' feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children's autism diagnosis deepened, but many continued to pray for a miracle.</p><p><strong>Conclusion: </strong>Future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children's autism diagnoses.</p><p><strong>Contribution: </strong>The study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of <i>ubuntu</i>, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity.</p>","PeriodicalId":45606,"journal":{"name":"African Journal of Disability","volume":"12 ","pages":"1101"},"PeriodicalIF":1.3000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10091053/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"African Journal of Disability","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.4102/ajod.v12i0.1101","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Background: There is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. Mothers' reactions to their children's autism diagnoses have been identified as a key factor influencing their children's long-term outcomes.
Objectives: This qualitative study aimed to explore how South African mothers experience their children's autism diagnoses.
Method: Telephonic interviews were conducted with 12 mothers from KwaZulu-Natal to understand their experiences prior, during and following their children's autism diagnoses. The data were analysed thematically according to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an Afrocentric theoretical lens.
Results: The participants held strong cultural and religious beliefs which influenced the entire diagnosis process. Some, who waited a long time, turned to traditional healers or religious leaders. While some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child's condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. Over time, mothers' feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children's autism diagnosis deepened, but many continued to pray for a miracle.
Conclusion: Future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children's autism diagnoses.
Contribution: The study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity.
期刊介绍:
The African Journal of Disability, the official journal of CRS, AfriNEAD and CEDRES, introduce and discuss issues and experiences relating to and supporting the act of better understanding the interfaces between disability, poverty and practices of exclusion and marginalisation. Its articles yield new insight into established human development practices, evaluate new educational techniques and disability research, examine current cultural and social discrimination, and bring serious critical analysis to bear on problems shared across the African continent. Emphasis is on all aspects of disability particularity in the developing African context. This includes, amongst others: -disability studies as an emerging field of public health enquiry -rehabilitation, including vocational and community-based rehabilitation -community development and medical issues related to disability and poverty -disability-related stigma and discrimination -inclusive education -legal, policy, human rights and advocacy issues related to disability -the role of arts and media in relation to disability -disability as part of global Sustainable Development Goals transformation agendas -disability and postcolonial issues -globalisation and cultural change in relation to disability -environmental and climate-related issues linked to disability -disability, diversity and intersections of identity -disability and the promotion of human development.